Jae Park, MD: Any advice for community oncologists who may be seeing these patients either for newly diagnosed hairy cell leukemia or in the relapse setting? Obviously it’s a rare disease, and there are a lot of therapies...and choosing the duration, it’s complex. But any advice from our panelists? What you would like to share?
Steven Coutre, MD: This is a great example of a very uncommon disease where it’s good to get advice from someone who has more experience, even if most of the patients will end up being treated by their referring physician in the community, which is appropriate. Oftentimes, you get called, it’s 2 months after treatment, and their counts still haven’t fully recovered. “Should I treat them again?” and things like that, which only come with experience. I would strongly advocate a second opinion. That establishes a good relationship so the physician can then contact you after they’ve treated the patient if problems come up.
Farhad Ravandi-Kashani, MD: I agree, and I think in my practice this disease is so uncommon that many of the private oncologists do tend to call and ask. I agree that that would probably provide patients with the best outcome.
Alan Saven, MD: This disease is very much driven by the patient rather than the physician. Second opinions don’t come, unfortunately, from physicians now. They come from patients. I half-jokingly said in the beginning that these patients will become world experts. They will. They’ve read every publication of all the people at the top. They know this disease because they have decades to prepare. If I could give advice, it probably would be don’t overtreat these patients. Don’t treat them just for flow cytometry at relapse. Don’t treat them just for minimal residual disease. And most importantly, get the pathology straight in the beginning. It’s a tragedy for these patients to be lumped into some other lymphoproliferative disorder for a long period of time when there’s a plethora of effective drugs in the armamentarium that the patients can benefit from. Getting the pathology straight in the beginning is the best. It’s not that uncommon for people to come to see me for myelodysplasia and end up having hairy cell leukemia. Just get the pathology straight from the beginning. Private practitioners can do this, but if there’s someone who can have some rapport with them, it’ll be advantageous. But don’t overtreat these patients.
Andrea Sitlinger, MD: Being able to at least be tied, if it’s a patient who becomes relapsed/refractory or is not responding as expected. Having that tie also for clinical trials is important so they can get to that next level of care.
Jae Park, MD: It’s important that you get the diagnosis correct the first time with pathology. I did have a patient with aplastic anemia, presumed diagnosis, set for transplant who ended up getting a second opinion and it was hairy cell leukemia. It’s such a drastic, obviously, course of treatment and prognosis for that particular—mid-40s, young woman, so I do agree because of the rarity of the disease, you want to be confident of the diagnosis. I agree. That’s a very important point that you generated there. It’s very much patient driven. With the Hairy Cell Leukemia Foundation and others, there is a plethora of resources for rare disease and good advocacy groups, and that also enables these types of clinical trials to happen for this rare disease. It’s fantastic to see, and there’s a lot to learn from. There’s so much ongoing and emerging research happening in this area.
Just figuring out the BRAF inhibitor, moving through the front line is one too, and perhaps there is a role in the front-line setting and all the other newer agents we discussed and did the MEK inhibitor in combinations. Maybe as good as a cladribine pentostatin is for the first-time therapy, there is room for improvement.
This will also come into future whether we can avoid immunosuppressive therapy, especially with all we are learning with the COVID-19 situation and the consequences of such.
Thank you to all of you for this rich and informative discussion that you participated in. We have learned a lot about hairy cell leukemia from the basic biology, clinical presentations, and the first-, second-, and third-line therapies. We have learned a lot from other additional resources that patients and oncologists can also look to. Thank you again to our viewing audience. We hope you found this OncLive Peer Exchange® discussion to be useful and informative. Thank you.
Transcript Edited for Clarity